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September – My Diagnostic 9/11

“For me and my family personally, September 11 was a reminder that life is fleeting, impermanent, and uncertain. Therefore, we must make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.”  -Deepak Chopra, M.D.

On September 11, 2001, I sat on my sofa watching The Today Show, in horrified disbelief, as two airplanes flew into The World Trade Center.  Flames engulfed the buildings for moments of dreadful suspension before collapse. . .a dark cloud of destruction rising to obscure visibility.  News anchors gave a valiant effort of trying to keep personal emotion from professional reporting of the carnage — no answers for the massive confusion, destruction, death. . .screams, human and rescue vehicles, combined in shrieks of unified despair.

Soot-covered victims and first responders emerged from the thickening smoke, survivors and heroes.  Including the Pentagon attack and the plane crashed in Pennsylvania, *over 3,000 people were killed, including more than 400 police officers and firefighters.

Twelve years have passed, but 9/11 will always remembered — in memory of those who lost their lives, in honor of our military, first responders, and the resilience of the American people with the rebuilding of the site of the Twin Towers with The National 9/11 Memorial.

In September of 1994, I had yet another diagnostic evaluation to try to diagnosis the elusive progressing symptoms I had been experiencing for four-five years.  The previous months had become a rapid unraveling of physical ability to a frightening uncertainty as to the cause.  Waiting in the neurology waiting room of a large teaching hospital, I was keenly aware of the macabre movements of other patients, various gait aids, and tried to calm my heart of ‘worst-case scenarios’.

My diagnostic neurologist is one of the country’s finest.  After a thorough clinical evaluation, I was given an electromyogram (EMG) and nerve conduction study, both extremely uncomfortable tests, especially with my diagnosis. . .symptom triggers.  (uncontrollable muscle twisting spasm and rigidity).

Memory of the traumatizing diagnosis disclosure come to me in disjointed fragments: the brightness of the room; the glare of the doctor’s coat; heavy, suspended dread.  “I believe you have Stiffman Syndrome.”  With those two friviolous-sounding words, my life was forever altered by the devastation of an incurable autoimmune neurological disorder — a formidable terrorist.  I listened to the doctor through surreal tunnel vision, trying to emerge my sinking thoughts to focus on an escape, a cure, as my life came crashing around me.

Walking out of the office into the waiting room, I saw the neurologically damaged with new eyes.  I was one of them.  We were all victims of a diagnostic terrorist.  With my future unexpectantly torched, the acrid smoke obscured hope as I listened to my heart silently scream in fear.

There isn’t a cure for Stiff Person Syndrome (SPS).  In 1994, a home computer and Internet was six years into the future.  Three NIH studies for SPS hadn’t been conducted yet.  “Maybe” an experimental therapy will help “if” insurance approves.  I was also given the neuro’s personally published article on Sudden Death, (respiratory arrest) a possible prognosis for me.  The experimental therapy improved my quality of life, but did not give the hopeful remission. . .so far, just one episode of a close respiratory arrest, triggered by emotional duress.

The National 9/11 Memorial is a thing of beauty.  As the American people have not forgotten the atrocity of that fateful day, the Memorial is a testament honoring what was with what will be.

Nineteen years have passed, but September is my diagnostic 9/11.  As I crawled out of the physical devastation of what I was, I have never lost who I am.  My memorial is my life.  Rebuilding is a continual work in progress.  I hope to make it beautiful — make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.

Dedicated to the fallen, the rescuers, our military, and fellow Americans in remembering 9/11.  I want to acknowledge those who live with the devastation of debilitating chronic illness, their loved ones, and the caring health professionals who make a difference.

*9/11 Attacks  (from the History channel.)

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5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Guest Blogger on NORD – Rare Disease Day

Debra-Richardson

 STIFF PERSON SYNDROME: A FIGHT TO THE FINISH LINE
February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,

Debbie

Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013

MIA – Missing In Action

“Only as high as I can reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be. ” ~Karen Ravn

Time does fly – on turbo jets!  I have not entered a blog post since summer.  Now I understand the facebook picture circulating of me as a missing person…

AWOL – absence without leave.  My body (bunkmate), left my life over two decades ago taking with it unhindered mobility, physical freedom, unlimited choices.  I was abandoned in the “you will never get out” boot camp of chronic illness – alone with (hushed whisper), Drill Sgt. Stiff Person Syndrome and Lt. Diabetes.

Somehow I adjust or take my licks, but I am still a defiant recruit.  With Sgt. SPS, you never want to hear “drop and give me…” or “move it!”  I am still learning about Sgt. SPS, his prominent role in my life, and boundaries.  With determination, response to meds, effort, and time, I am given precious furloughs – “me” time.  Boundaries can sometimes be breached in quirky creative ways.

In 2010, I opted for intensive training, a two-year introspection/restructuring of my life… equal to the grueling Navy Seal “Hell Week.”  I worked on my mind, healing my spirit, challenging my body.  This year, my furloughs have been diverse and far-reaching.  Time has gotten away from me, but not life.

From travels to Tampa and Savannah, Blue Ridge Mountains to the Rockies, Atlantic Ocean to the Great Lakes, most included family and friends.  Gym workouts, community classes, church, scavenger shopping, dinner outings, and various misadventures – correlated around my demanding medical schedule – captured by life.

With a blessed heart, I realized a dream – worth the fall, fatigue, re-energized arm neuropathy, and aching muscles… 2012 – my “tween” year.  So… my email is a dusty pile, my syndrome advocacy has stalled, and my blogs have been neglected because I have been MIA – missing in action.

In times of restful silence, my thoughts (and aches), view my Christmas tree with future dreams and reflective gratitude… “in spite of.”

Copyright © 2012

Stepping Out With Rambo & Rocky

Rocky

John J. Rambo: “…There isn’t one of us that doesn’t want to be someplace else. But this is what we do, who we are. Live for nothing, or die for something…”

Rambo

Rocky Balboa: “The world ain’t all sunshine and rainbows. It is a very mean and nasty place It will beat you to your knees and keep you there permanently if you let it. You, me or nobody is going to hit as hard as life. But it ain’t about how hard you hit, it is about how hard you can get hit and keep moving forward, how much can you take and keep moving forward. That’s how winning is done!”

During the 80’s I was enthralled by Sylvestor Stallone’s cinematic underdog heroes, John Rambo and Rocky Balboa.  Gutsy determination fueled by “a burning heart” were characteristics of both men challenged with insurmountable obstacles in facing formidable adversaries.  (Add my female appreciation for Sly’s rippling male muscles.)

Diagnosed with Stiff Person Syndrome, my life became a grueling challenge in facing an undefeatable foe.  Appreciation for rippling muscles has become a paralyzing dread.  SPS can hijack my body in uncontrollable waves of painful muscle spasm.   “You, me or nobody is going to hit as hard as life.”  My life is a war, each day a boxing match–Rambo and Rocky, symbolic of living with Stiff Person Syndrome.   “It is about how hard you can get hit and keep moving forward.”

With a typical female mindset, I have a wardrobe of gait aids to accessorize activity with ability.  Rocky and Rambo are my two machismo escorts.  Rambo, aptly decked in camouflage, is my battle comrade for the mall, our war zone.   With my SPS hijacked perceptions, Rambo helps guide me through the minefield of syndrome angst camouflaged as a “normal” shopper.  Packing my artillery of emergency medications, I anticipate possible sniper fire. (Trigger-induced stimulus for symptom attack.)

Rocky is my caddy, companion, and gait aid.   He fits in when I go to the gym carrying my “life support” of medication, cell phone, emergency contact info, snacks for sugar hypos, & glucometer…a Rambo camouflage.  Within the familiar boundaries of the gym, I have become lax in my agoraphobic training of walking “out there.”

Stiff Person Syndrome continually holds my perceptions hostage, creating a possible red alert reaction of symptom overdrive…an Exorcist muscle implosion of Twist & Shout.  A survival mode of fear and avoidance kicks in, further surrendering me to SPS.  Time to reschedule workout training for solo walking against Stiff Person Syndrome assault.

For my first match…

1) Understand my weaknesses.  With a malfunctioning neurological circuit breaker, my perceptions are on continual stimulus overload.   I am possessed with a deranged hyper-sensitivity to a breeze, the cracks in the asphalt, a barking dog, the child on an erratic bike, oncoming walkers, traffic, outside noise, speed, all sucking me into a frenzied vortex of consuming syndrome awareness…”scared stiff.”  Dazed, SPS will deliver a strong upper cut, (spasm), trapped against the ropes or knocking me to the ground.  Olay is no match for stitches, injuries or bruises.

2) Plan an offensive.  To minimize perception distractions, I chose a serene “out there” arena.  I would face my adversary when medication was at peak performance, my body in a co-operative mode.  In my ringside corner, I had a prayerful pep talk with my Heavenly Coach.

3) Commit.  Life with SPS is war, every endeavor a staggering boxing match.  Solo walking, “out there” in an asphalt arena is my chosen challenge.  I strap Rocky into Rambo, my muses, and open the front door…

There’s no easy way out…

Copyright © 2012

  

Divine Driving – Against All Odds


“There is great meaning in life for those who are willing to journey.”
~Jim England

Winter was bitter, harsh, and lonely morphing into a gray, damp, chilly afterthought. No spring for her. Sharing morning marathon talks over coffee by phone, my mom and I are very close but separated by 900 miles. The long bleak months of home confinement, coupled with some newly diagnosed health issues, were taking a toll on her spirit. I heard the dejection in her voice.

I was planning a summer trip, but loving concern kept niggling at me to plan an earlier surprise visit. Not a problem…just a budget buster, the numerous complications of my physical conditions, and fear. In recent life assessment, one of my unrecognized dreams/goals was to take a solo road trip, just me, a big girl. Scary stuff considering my physical limitations, diabetic monitoring, and syndrome triggers.

Nine hundred miles is not a road trip, but a sojourn. The more I thought about it, the more excited I became. Mother’s Day was approaching. A surprise gift–a hand-delivered card. Love often overrides sound judgment. (Thankfully.)

I decided to set out the Friday before Mother’s Day, allowing a two-day drive with a motel layover. MapQuest yielded a written map with instructions. One of my disabilities is being severely directionally challenged. A Garmin was a previous gift to help with local navigation.

On Monday of my countdown week, I had an infusion. This infusion had an unusually long and nasty recovery–three days of headache, fatigue, mild nausea, and aches. I started to doubt the wisdom of my plans. Thursday dawned with an improved physical outlook, reigniting my initial excitement.

Packing. Clothing, cosmetics, and accessories are minor. My life support: medications, insulin pump supplies, backup pump, glucose monitor, test strips, and gait aids were carefully laid out, packed, unpacked, rechecked, and triple-checked along with remembering necessary emergency contact information.

I tried to remain calm. Excitement or angst, of which I had an abundance of both, aggravate or create syndrome stiffness, pain, and spasmodic attacks. Breathe, pray, breathe, pray.

After a restless night, I awoke and loaded the car. (The inventor of wheeled luggage has my forever gratitude…ease and surrogate walker.) A mix of Cd’s, snacks, bottled water, and a cooler for my insulin was the last to go into the car. I planned my departure for late morning to avoid rush hour traffic. SPS does not handle any sort of rush well.

I stopped to get a coffee to compensate for my lack of sleep the night before. The skies opened to a flooding deluge of rain…my worst fear as a passenger in a car, let alone driving on an interstate filled with semi-trucks.

I closed my eyes and said a simple prayer, “God, I need you to be the driver. I cannot do it without you.” A settling calm came over me.

Most of Friday was driving through torrents of rain. Brain-dead by rush hour that evening, I finally exited from the standstill bumper-to-bumper 5 mph traffic to check into the first-in-view motel. With my hiking pole and roll-along carry-on, I negotiated a killer deal with the motel clerk.

Laying on the king-sized bed of my ritzy suite, I was heady with the independence of the day’s accomplishment…”normal”…that delicious and elusive word. I called my supportive loved ones, clued in on my surprise, to update on the safety of my status. A hot shower and bed beckoned to rest my scratchy eyes, elevate my tingling, burning right arm, and stretch my aching back and stiff neck.

Savoring the continental breakfast, as a first-time solo traveler, was a new and exciting experience for me. Resetting my Garmin traveling companion, I set out for the long day’s travel with seeing Mom as my prize at the end of the day. Giggles of anticipation erupted from me all day.

I pulled up that evening as Mom was grilling Bratwurst. I told her, “I thought I would save the postage for your Mother’s Day card and just bring it to you.” Happiness that shatters the heart was felt in our hug.

It was one of the most amazing experiences of my adult life–the euphoria of being with Mom and overcoming 20+ years of SPS not letting me, or others telling me I can’t, for me to make my first solo road trip–at the age of 53, driving 900 miles. But I was not the driver.

“The feeling remains that God is on the journey, too.” ~Teresa Of Avila

Copyright © 2011

Second Base–Rounding Third

March 12, 2011

“Progress always involves risks. You can’t steal second base and keep your foot on first.” ~Frederick B. Wilcox

I always viewed baseball as the least invasive contact sport, until I compared it to living with Stiff Person Syndrome. The opportunity to score is only when you leave the safety of the dugout–alone–just you, the pitcher, and the ability to crack a trick pitch to run for the safety of first base. A beginning.

I made a feeble attempt to leave confining dugout safety a few years ago. SPS fear and insecurity had me back in the dugout, with a different team, and still a bench- warmer. “Batter up!” Taking another chance at risk, I picked up a heavy bat, tapped the packed sand from my cleats, and looked the pitcher in the eye.

Hit in the side by a fast ball I could not duck, I hobbled to first base, but I was in position to score! Baseball involves understanding the rules, looking for opportunities, and stealing the safety of a base while sliding to avoid being out.

Catching my breath from the hard hit landing me on first base, I welcomed the opportunity to score. Alone on the field with nine players focused on taking me down, (SPS symptoms), the glare of the lights, and yelling crowd, (boos & cheers), were distractions interrupting my strategy to steal. Just breathe and focus.

My recent neuro visit was an obvious uplift for him regarding my progress–going over my stats. I have been going to the gym 3 times a week, gait aid in hand, but doing light weight training and elliptical workouts during medication peaks. Outside walking with my two hiking poles on off days is agoraphobia training. (I was stuck outside of the library last week, but a kind stranger walked me to my car.) I mentor a child and have developed some friendships and a social life topside of the SPS underworld. I still do some SPS advocacy, but within a healthy balance. Third base goals are in my sight.

Dusting off my knees from my brutal second base slide, I watch the ongoing game with renewing confidence–waiting for my third base opening. I am already contemplating home and another round at bat. My lunch as a mentor this week was appropriately the baseball favorite–an American hot dog.

“Never let the fear of striking out get in your way.” ~Babe Ruth

Copyright © 2011